Insights into the use of social comparisons within an advanced cancer setting

Background The PROACT (Patient Reported Outcomes in cancer, impact of Age and Carer role demands associated with Treatment) study had the primary aim of developing two scales measuring the impact of cancer on wellbeing and caregiving responsibilities, for people with cancer and the individuals supporting them. The project consisted of four consecutive studies; the first stage was the collection of qualitative narratives to understand the patient/caregiver experience. This paper reports on an incidental finding from these narratives. Methods The researchers conducted semi-structured interviews exploring participants’ views on the impact cancer had on their quality of life. They interviewed 24 people with stage III/IV cancer from three tumor groups, Lung (n=6), Melanoma (n=9) and Ovarian (n=9), and 23 informal caregivers. Interviews were recorded and transcribed verbatim and a framework was developed through open coding. A framework approach to thematic analysis was employed. Results Twenty themes and 33 sub-themes were identified including topics such as impact for caregiving and employment. There was an unplanned finding of participants recurrently using concepts of ‘luck’ or good fortune when describing their situations. While not a theme itself this narrative was present across the framework, occurring when individuals made comparisons to ‘other’ groups of people perceived as facing more difficulties. Conclusions This analysis provides insight into the use of language by both patients and informal caregivers in the advanced disease setting, laying the foundation for future research exploring any effects this has on dyadic wellbeing. These interpretations form a basis to explore whether this language can be harnessed by healthcare professionals to deliver information in line with an individual’s conceptualization of their situation

The pervasive nature of uncertainty – a qualitative study with patients with advanced cancer and their informal caregivers

Purpose: To explore the impact of extended cancer survival on broader aspects of life and wellbeing such as occupational, financial and family life for patients with advanced cancer and their nominated informal caregivers. Methods: In-depth qualitative interviews, transcribed verbatim. A thematic framework was developed from an initial process of open coding and tested iteratively as new data were collected. Results: 24 patient-caregiver dyads with advanced ovarian (9) melanoma (9) or lung cancer (6). Patients were aged 39-84 (median 62 years), caregivers 19-85 (median 54 years). Caregivers were the partners/spouses (15), children (5), siblings (2) and friends (2) of patients. One particular theme, ‘uncertainty’, encompassed many issues such as planning for the future, providing for one’s family, employment and finances. Uncertainties were related to the timescale and trajectory of the disease and lack of control or ability to make plans. There were marked age effects. Accounts from within the same dyad often differed and patients and caregivers rarely discussed concerns with each other. Conclusions: Both patients and their informal caregivers were challenged by the uncertainties around living with advanced cancer and the lack of a defined trajectory. This impacted many diverse areas of life. Although distressing, dyads seldom discussed these concerns with each other. Implications for survivors: Uncertainty is a recurrent issue for cancer survivors and their families impacting broad aspects of their lives and their ability to move forward however patients and caregivers in this study rarely discussed these concerns together. Uncertainty should be discussed periodically, together, and 3 health care professionals could facilitate these discussions. The use of one or more ‘trigger questions’ in clinic appointments may provide an opportunity to start these dialogues

Using patient perspectives to inform communication training materials for health care professionals discussing BRCA mutation testing

Purpose As demand for genetic testing grows and a wide range of health care professionals (HCPs) are potentially involved in discussions about testing and delivering results, we developed an educational package to help HCPs with these conversations. Methods To inform the content of training materials, we conducted interviews with 11 women four of whom had BRCA1 and seven with BRCA2 mutations. Five women had or were currently receiving breast cancer treatment. Ages ranged from 38 to 77 years. Interviews were audio-recorded, transcribed verbatim and analysed using the Framework approach to thematic analysis. Results We identified 18 themes and 12 subthemes across the interviews, encompassed by six overarching themes: risk, decision-making, information and understanding, communication and improvement, accessing the system: process and frustration, emotional and social drivers. Conclusions The findings informed the didactic components of an educational communication workshop and a summary document for attendees. Qualitative interviews provide an important way of incorporating the patient perspective into communication training materials for HCPs by highlighting key issues that matter most to the patient

Development and validation of the patient roles and responsibilities scale in cancer patients

Purpose The Patient Roles and Responsibilities Scale (PRRS) was developed to enable a broader evaluation of the impact of cancer and cancer treatment, measuring ‘real world’ roles and responsibilities such as caring for others and financial and employment responsibilities. Here we report the development and initial validation. Methods The 29-item PRRS was developed from the thematic analysis of two interview studies with cancer patients and caregivers. In the evaluation study, participants completed the PRRS alongside the Social Difficulties Inventory (SDI), the main criterion measure for concurrent validity, and the Functional Assessment of Cancer Therapy – General (FACT-G) and WHO Quality Of Life-BREF (WHOQOL-BREF) for additional convergent validity data. Questionnaires were completed at baseline, 7-days (PRRS only) and 2-months. Demographic data and patient characteristics were collected at baseline. Results One hundred and thirty-five patients with stage III/IV breast, lung or gynaecological cancer or melanoma completed the PRRS at least once. Five items performed poorly and were removed from the scale. The final 16 core items selected comprised 3 dimensions: Family Wellbeing, Responsibilities and Social Life, and Financial Wellbeing, identified in principal component analysis, accounting for 61.5% of total variance. Missing data (0.6%) and floor/ceiling effects were low (0%/1.5%). Cronbach’s alpha was 0.9 for the PRRS-16; 0.79-0.87 for the subscales. PRRS showed good test-retest reliability (ICC-0.86), sensitivity to change and the predicted pattern of correlation with validation measures r=ǀ0.65-0.77ǀ. The standalone 7-item jobs and careers subscale requires further validation. Conclusions Initial evaluation shows the PRRS is psychometrically robust with potential to inform the evaluation of new treatments in clinical trials and real world studies

Development and validation of the caregiver roles and responsibilities scale in cancer caregivers

Purpose The Caregiver Roles and Responsibilities Scale (CRRS) was developed to facilitate formal assessment of broad life impacts for informal (i.e. unpaid) caregivers to people with cancer. Here we report the development and initial validation. Methods The CRRS was developed from the thematic analysis of two interview studies with cancer patients (stage III-IV breast, gynaecological, lung or melanoma) and caregivers. In the evaluation studies, participants completed the CRRS alongside the Caregiver Quality of Life - Cancer, the main criterion measure for concurrent validity, and the WHOQOL-BREF for additional convergent validity data. Questionnaires were completed at baseline, 7-days and 2-months. Demographic data and patient characteristics were collected at baseline. Results Two-hundred and forty-five caregivers to people with stage I-IV breast, colorectal, gynaecological, head and neck, lung or renal cancer or melanoma completed the CRRS at least once. The final 41 core items selected comprised five subscales: Support and Impact, Lifestyle, Emotional Health and Wellbeing, Self-care and Financial Wellbeing as well as three standalone items. Missing data rate was low (0.6%); there were no ceiling or floor effects for total scores. Cronbach’s alpha was 0.92 for the CRRS-41; 0.75-0.87 for the subscales. CRRS showed good test-retest reliability (ICC=0.91), sensitivity to change and the predicted pattern of correlation with validation measures r=0.75-0.89. The standalone 7-item jobs and careers subscale requires further validation. Conclusions Initial evaluation shows the CRRS has good validity and reliability and is a promising tool for the assessment of the effects of cancer and cancer treatment on the lives and wellbeing of informal caregivers

An online review of informational sources for advanced or high-risk cutaneous squamous cell carcinoma

Objective Cutaneous squamous cell carcinoma (cSCC) is one of the most prevalent non-melanoma skin cancers worldwide. While usually treatable, patients with high-risk or advanced disease have few treatment options and limited resources available. This review assesses what online information resources are available to patients and their families about either high-risk or advanced cSCC. Methods Searches were run, via Google, using 8 terms such as ‘advanced cutaneous squamous cell carcinoma patient information’. Advertisements were removed and the first 3 pages/30 results from each search were screened for duplicates and then against eligibility criteria. Websites needed to have been updated within the past 5 years, be freely accessible, designed specifically for patients and refer to the advanced disease or high-risk setting. Remaining results were assessed using the DISCERN tool. Results Of the final 240 results, 121 were duplicates and 104 were ineligible. The remaining 15 sources were predominantly aimed at American audiences, used variable terminology and revealed differing treatment pathways. Only 3 sites were deemed as ‘high’-quality information sources. Conclusion There is a lack of accessible online information on high-risk or advanced cSCC for patients. What is available is often too scientific or clinical and lacks clarity about the disease and treatment options. Practice Implications Further work is needed to improve the integrity and accessibility of online sources and to signpost patients to the most reliable information. This should include elements of patient led research, clinical education and information development

Patient and public understanding of the concept of ‘personalised medicine’ in relation to cancer treatment: a systematic review

Personalised medicine (PM) is becoming increasingly integrated into standard clinical practice for treating numerous diseases, including cancer. Implementing PM into healthcare systems will only be successful with the acceptance and input of both patients’ and public opinion. This review, therefore, aimed to identify both patients’ and public understanding, and perceived benefits and concerns of PM in cancer treatment. A literature search was conducted using MEDLINE, EMBASE, PsycINFO and CINAHL databases. The eligibility criteria specified that papers must explore the public or patients’ understanding of PM or pharmacogenomic (PGx) testing in relation to cancer treatment. Patients have a greater understanding of, and trust in, PM compared with members of the public, but often misunderstand how genomic testing in PM works. Key areas that can be targeted to inform future health literacy interventions include genetic literacy for the public and understanding of how PM testing and treatment works for patients

Key health outcomes for children and young people with neurodisability: qualitative research with young people and parents

OBJECTIVES: To identify key health outcomes, beyond morbidity and mortality, regarded as important in children and young people with neurodisability, and their parents. DESIGN: Qualitative research incorporating a thematic analysis of the data supported by the Framework Approach; the International Classification of Functioning, Disability and Health (ICF) provided a theoretical foundation. SETTING: The study was conducted in community settings. PARTICIPANTS: Participants were 54 children and young people with neurodisability: 50 participated in focus groups, and 4 in interviews; 53 parents participated: 47 in focus groups and 6 in interviews. Children/young people and parents were recruited through different networks, and were not related. RESULTS: Children/young people and parents viewed health outcomes as inter-related. Achievement in some outcomes appeared valued to the extent that it enabled or supported more valued domains of health. Health outcomes prioritised by both young people and parents were: communication, mobility, pain, self-care, temperament, interpersonal relationships and interactions, community and social life, emotional well-being and gaining independence/future aspirations. Parents also highlighted their child's sleep, behaviour and/or safety. CONCLUSIONS: Those responsible for health services for children/young people with neurodisability should take account of the aspects of health identified by families. The aspects of health identified in this study provide a basis for selecting appropriate health indicators and outcome measures

Parents' agendas in paediatric clinical trial recruitment are different from researchers' and often remain unvoiced: a qualitative study

Ensuring parents make an informed decision about their child's participation in a clinical trial is a challenge for practitioners as a parent's comprehension of a trial may differ from that intended by the practitioners responsible for recruitment. We explored what issues parents consider important when making a decision about participation in a paediatric clinical trial and their comprehension of these issues to inform future recruitment practice. This qualitative interview and observational study examined recruitment in four placebo-controlled, double-blind randomised clinical trials of medicines for children. Audio-recorded trial recruitment discussions between practitioners and parents (N = 41) were matched with semi-structured interviews with parents (N = 41). When making a decision about trial entry parents considered clinical benefit, child safety, practicalities of participation, research for the common good, access to medication and randomisation. Within these prioritised issues parents had specific misunderstandings, which had the potential to influence their decisions. While parents had many questions and concerns about trial participation which influenced their decision-making, they rarely voiced these during discussions about the trials with practitioners. Those involved in the recruitment of children to clinical trials need to be aware of parents' priorities and the sorts of misunderstandings that can arise with parents. Providing trial information that is tailored to what parents consider important in making a decision about a clinical trial may improve recruitment practice and ultimately benefit evidence-based paediatric medicine. © 2013 Woolfall et al